Scholars have recognized the importance of illness narratives, and some of this work hastargeted terminal-illness stories, but little has directly addressed what distinguishes them from other illness narratives. In most illness narratives, recovery and life beyond the acute incident are a critical part of the overall experience of a disease. But terminal illness always ends with death. It has no “after.” This difference fundamentally changes how the illness is experienced – and how we should analyze a story told about it. Recognizing this distinction is important not only from a narratological perspective, but also for the study of the ways people live while dying and the models of behavior these stories reveal.
I offer four ways to consider the specific genre of terminal-illness stories: the desire to tell, a turn to living dyingly, the alternative triumph, and endings-beyond-endings. These four elements recognize that terminal-illness stories are a distinct subset of illness narratives, and thus they can yield important insights unavailable through existing methods of looking at illness narratives more generally. Beyond the expanded narratological knowledge, this understanding is crucial because close listening is an ethical responsibility both to the individual and to those who come after her. Thinking about how and why people tell these stories and what we can get from them helps us see how they function in the world.
That, in turn, gives us more concrete ways to think about the abstract ideas around terminal illness, dying, and death. This awareness will let us think more carefully about our master narratives of death and dying and what models of behavior are available to those who are terminally ill and those who care for them, and it can also offer insight into societal structures of health care. Such insights can further the cultural movement toward supporting a so-called good death, part of a larger shift from a biomedical model to a biocultural one that incorporates a patient’s subjective experience. Recognizing these signals can help a dying person and her caregivers think through treatment options, social support, and other aspects of care. Truly hearing the stories told by people with terminal illness helps us create a better ethic of caregiving and a better dying for all of us.
| Identifer | oai:union.ndltd.org:columbia.edu/oai:academiccommons.columbia.edu:10.7916/je9g-w980 |
| Date | January 2024 |
| Creators | Henderson, Cherie |
| Source Sets | Columbia University |
| Language | English |
| Detected Language | English |
| Type | Theses |
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